All too revealing. When to just shut up.
September 13, 2010
I’ve got Mixed Connective Tissue Disease. If you’re reading this blog you know this. By writing this blog, I have made the decision to be open about my illness. I want people to understand, to know about this illness, to be aware that sometimes I have hard days but generally life goes on.
However, are there times when I should keep this information to myself? Am I oversharing? Generation Y (of which I am a part of) have grown up in a society where sharing, especially online, is the norm. I have always been an open person and saw this as an extension of this.
However, there are times in life when maybe sharing isn’t the best idea. I recently went on a blind date. I certainly wasn’t racing to tell him I have a chronic illness and baulked when I found out he had access to my Facebook wall (on which I post this blog). Whether he had seen and read this blog, he didn’t make clear and I am undecided if I would want him to know I’m sick before giving me the chance to show that I am still me and it’s not a reason not to give me a chance.
I am also on a learning curve about when and where to share information on how I am feeling on a particular day. I tend to be honest if someone asks me how I am but realise…people get as sick of hearing I’m still in pain, as I get sick of always being in pain.
What some may not realise is, yes I am suffering but I’m not letting it stop me from getting on with my life, I am not letting it affect my work and I’m not letting it stop me being social.
I still intend to write my blog but I am now choosing to keep day to day symptoms to myself. I’m not sure if it’s the right decision but I need to find out.
So, if you ask how I am, chances are my answer will be “Fine thanks, and you?”
naomijoyce83
MCTD-The truth, the challenge, the hope 
When I come back to Aus (next April hopefully), I will call you to arrange a meet and drinks. When I ask “How’s you?” I will expect a “Fine Thanks, and you?”, but when we meet, after the “how’s the pub/cats/bish, etc”, I would rather that you were honest and tell me “Colin, I’m scared/worried . . . . ” or whatever.
I’ll understand, I won’t get bored and start yawning, I will be nosey and ask questions others stay away from for fear of upsetting you. Your decision to start this blog to show what you are going through should be shared. It may be of comfort to other MCTD sufferers to know that the disease is highlighted. Who knows maybe some philanthropic (big word) person will bundle a load of cash into research????
I “enjoy” reading the blog, and I am sure that others do also. It helps to understand what others are going through. I just wish that my sister had done something similar a few years ago.
So for the immediate future, keep writing and keep well.
Colin & cats
oooh, tricky one naomi! i feel for you :o(
on the one hand, you’re doing a great thing by informing about something that lots don’t know about nor understand, both with the actual disorder, and, about the reality of living with it. which i’m sure is appreciated by many on a variety of levels.
but, then again, if you’re like me, in that you don’t want the disorder to be “who” you are, then it makes you reluctant to even bring it up? but, then you rob people of the opportunity to learn something that they need to know?
and, then there’s the fact that people, being human, become “compassion fatigued” at different rates, depending on their individual makeups – but, most certainly do become fatigued at some point? and, knowing not to take that personally is important.
but, in your situation where you are young and single, and wanting to meet someone special, then, it is extra tricky wondering how much you should be divulging on public arenas, such as social networking sites?
before the days of cyberworld, you met someone, and, you were attracted because of what you looked like, your personality, combined with how you presented yourself, including body language, some personal electro-magnetic configurations with ensuing attract/repel, combined with who and what you were affiliated with (your friends, family, work, beliefs, education levels/intellect, interests etc). then, whatever came after that was an afterthought? with social networking, the afterthoughts are up there, upfront? not really a normal way of meeting then greeting then…?
and, particularly as females in our society are programmed to be communicators, and express themselves, it means that those afterthoughts are more likely to be present? so, you will be judged as a whole package, instead of like a mulitlayered being, where the layers get revealed dependent upon the individual and the individual circumstance. damn tricky stuff?
guess it will have to be one of those situations, where you weigh up the pros and cons, and, try and find a solution that works best for you at the present?
so, wishing you heapsa luck with it, and, wishing you bucketloads of good health to help you along…… :o)
Dearest Nomes, You have always been a great communicator and writer and that is where this blog is good – both for yourself and, as you intended initially, to let others know about MCTD and to reach out to those who also share this awful disease. Be assured that those who care for you will not tire of your honesty when you say how you are feeling. I know what you mean though, you feel like you are always complaining when you are in pain, but you are far from being a negative person infact you blow me away with how strong you are!! Even if you choose not to let others always know how you are feeling, remember I am your Mum and am here to help share your burden any time of day or night- I am only a phone call away. Be encouraged my Darling. You are a wonderful person who unfortunately is having to endure this horrid situation. Lets hope the sun shines for you very, very soon.
Love you.
Thanks for starting this blog. I too have MCTD (among other illnesses) and do not know anyone else with this disease. However I’m more Generation X, so I tend to not share anything on the Internet. However if there is anyone out there in cyberland that lives in Virginia (northern Virginia hopefully) pls let me know. I’d love to chat……and please keep going with ur blog – it’s great!!!! Princess Jocelyn 😉
Hi Princess Jocelyn,
Thanks for the message. Hope you’re doing ok at the moment and manage to find someone in your neck of the woods who you can share the experience with. I’m in Australia so no help there.
Thanks for reading and feel free to share whenever you wish.
Princess Naomi